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Posts Tagged ‘Palliative care’

“You cannot go into the room where someone is dying

and not pay attention.  Everything is

pulling you into the moment.”  ~~ Frank Ostaseki

In 1987, Frank Ostaseski helped form the Zen Hospice Project, the first Buddhist hospice in America. In 2004, he created Metta Institute to broaden this work and seed the culture with innovative approaches to end-of-life care that reaffirm the spiritual dimensions of dying.

I love listening to his 3 tape series entitled, Being a Compassionate Companion.  It has so much heart and he conveys the teachings of the Buddhist Path and the hospice experience in such a natural, gentle way.

In these three tapes, Frank gives guidance and explains these important teachings for cultivating a compassionate presence at the bedside:

Over the next few days, I will be sharing more about each of these precepts (teachings).

I hope that I can share what I learned from Frank and from working at hospice.  Most importantly, I hope that when you encounter another person, you learn to take a deep breath and settle in and truly open yourself to the experience.

More to come.

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“Until our attitude toward life changes; until we are able to make a new and stringent commitment to the quality of life; until we practice what so many only give lip service to, and we redefine our concepts of life and love, our society’s problems will not be solved.”

~~ Elisabeth Kubler-Ross, On Children and Death: A Touching and Inspired Work about How Children and Their Parents can Cope with Death.

A lot of people want to throw everything that Elisabeth Kubrler-Ross did out, like the baby with the bath water.  I think that’s pretty ignorant.  Especially after I’ve gone back and re-read some of her books … not articles about her work, not critiques of her work, but the actual writing.

I don’t care who she was as a person.  We all have our demons.  We all have our angelic side.  As professionals, it’s hard to be human and be in the public eye.

But, I look at it this way… the woman bought a farm for children with AIDS to live so that they could be safe and well cared for at the end of their life.  Really?  Could a person be that bad if they were willing to do this in a time (though not that different than today) when there was so much stigma and hatred around the disease?

I would like to say that I never experienced the stigma.  I told anyone who asked what my red ribbon was for and never blinked.  And I was living in Nashville, TN.  But, I tend to say things that other’s don’t want to hear.

But I did see the stigma, how people looked at my brother when we took him to the store.. he just wanted to get out of the house because he had been too sick to leave for 2-3 weeks.  And people would turn around and go down another isle.

I heard from patients that their parents left them food on the step of a mobile home, on a farm, where animals would scurry around the disposable plates.  Why were they in a mobile home?  The parents didn’t want them in the house.

But I think that Elisabeth was brilliant in some ways and I think we have to take what she gave the world and accept the things that weren’t as brilliant or that were misunderstood.

In the quote above, I see such wisdom.  So much hinges on how we see the world, what we think about the ill, the aging, what dying should be about, and what healthcare and the government’s role is in our lives.

Our fear of death and talking about it, like we’re going to make it happen quicker if we talk about it, is why the APA can get away with their crazy diagnosis, why we don’t have more funding for palliative care separate from hospice care, and why when Universal Health Care was in the works people could be duped into thinking that there would be death panels.

We have an obligation to ourselves, our loved ones, our society, and future generations to look at our fear of dying, of illness, of difficult discussions and tough-to-deal with feelings.  But what’s the price we pay for turning a blind eye to these situations?

The health and stability of our planet.

Note:  I will be away on retreat for the next week.  I wish you all well and I hope you enjoy the articles that I have left in my stead.

May sorrow show us the way to compassion

May I realize grace in the midst of suffering

May I be peaceful and let go of expectations.

May I receive the love and compassion of others.

With love and deep gratitude, Jennifer

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An almost burnt-down lit candle on a candle ho...

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Great Op-Ed in the NY Times on problems that the dying face. . .

The first hospice in the United States was founded in 1974 in Connecticut.  And for the most part, we have stayed with the model of care that was started at The Connecticut Hospice. 

And 40 years ago, it was a brilliant and necessary movement that needed to come to us.  And 40 years later, some people are terrified of the word hospice.  We’ve had four decades to teach the general public about hospice, break through barriers, and hold the space for people in every state to have the option of compassionate care at the end of life.

But there are certainly gaps in the system.  We need more respite care, more caregiver education, more education to other medical professionals on the uses of palliative medicine and referring to hospice earlier.  And of course, we need to continue getting the message out about having those difficult discussions at home and at the doctor’s office before we absolutely have to make decisions.

In the 7 years I worked for hospice, there were only a handful of families that were unhappy with our services.  Those families often had other problems going on as well such as family disagreements, “unfinished business”, family secrets, or mental health issues and let’s face it most families have at least one of those things happening.

Those families that did love the hospice that I worked for used hospice intergenerationally and referred friends and family for our services.  And yet, people still get referred into hospice in the very last days and hours before their death.  So how do we change this?

How do we stretch a philosophy of care beyond its borders when there are people who still cringe at the site or sound of the word?  We really need to start looking at these issues as our overall population gets older, as more families no longer live near extended families, and as more and more of us don’t get married.

We need to be having the conversation now.  Was a nursing home the right place for this patient in the article?  What about a palliative care center?  What kind of hospice was this family working with and could they not have had traditional in home hospice with a network of friends, family, volunteers, and paid professionals like CNAs?  Or is this issue much bigger than bandages?

Would love to hear what you think!

Metta.

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